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Thread: Diagnosed DLBCL NHL 5/7/18, FISH confirmed double hit (MYC + BCL6 translocation)

  1. #1
    Newbie New User
    Join Date
    Jun 2018

    Diagnosed DLBCL NHL 5/7/18, FISH confirmed double hit (MYC + BCL6 translocation)

    I'm 39, male. I have two kids that I care for 100%. Girls, 7 and 9.
    I've been walking with a limp that has gotten progressively worse for the last couple of months.
    I had a pain in my right side, lower right abdomen (right above my hip bone)

    I went to gastroenterologist early 2017.
    He determined it was not related to gastric system, I should see an orthopedic.

    I went to two GPs. First GP determined it was a muscular issue, prescribed vimovo.
    Second GP I've seen about this issue since Oct 2017.
    Second GP determined it was a muscular issue as well.
    Asked me to go see

    I started limping this year around February 2018.
    Had X-Ray. Inconclusive.
    Had Ultrasound. Inconclusive.
    Made appointment in April when I started having night sweats and my right leg muscles would
    seize up uncontrollably and I would have intense nerve pain (something pressing on the
    bundle of nerves coming from my right hip into my right leg.

    GP ordered blood test. Performed 4/24/18. Came out abnormal.
    GP ordered CT scan. Performed 4/25/18. Revealed large lytic mottled lesion in the iliac bone with extension into the right iliacus and gluteus musculature. Recommended MRI.

    At this point GP called me and told me that he would refer me to an oncologist, nothing to worry about, standard practice,
    nothing to worry about.

    MRI performed 4/27/18. Abnormal marrow signal intensity involving the entire right ilium extending to the right superior pubic ramus. Associated soft tissue mass medial and lateral to the iliac wing. Area was 16 x 8.4 x 15.8 cm. A 3.2 x 1.8 x 2.3 cm geographic lesion within the posterior left ilium. Suspicious for metastasis.
    GP called me and ONLY told me about the 3.2 cm lesion within the posterior left ilium.

    I didn't have my patient records from GP. Called and asked for copy of CT scan, MRI report, blood test.
    Holy crap, this looks a million times worse than what GP communicated to me over the phone! Wow!

    Contacted oncologist. 5/2/18 biopsy. Results came back 5/7/18. Aggressive mature large B-cell lymphoma, NOS (not otherwise specified) Pending FISH studies for sub-classification. 5/10/18 FISH study results, double-hit lymphoma.
    Rare and extremely poor prognosis.

    5/11/18 bone marrow biopsy. Concordant bone marrow involvement. Ki-67 >95% Scary!!!

    Oncologist orders chemo inpatient. At least 6 cycles. He was worried about tumor lysis.
    At first he wanted to do R-Hyper-CVAD.
    Changed mind to R-DA-Epoch.

    Checked into hospital.

    Port-a-cath implanted.

    Initial meds caused tumor inflammation, my muscles started to seize up, was in worst nerve pain I've had ever for 2.5 hrs
    until nurse was able to get a hold of Dr then get "Narco" approval from hospital pharmacist.
    Nurse could tell extreme pain based on high BP, heartbeat.

    Got 2 doses or morphine first night.
    Got 2 doses or morphine second night.
    3rd night, I had very bad lactic acid from the muscles seizing. Couldn't walk.

    Somewhere on the 2nd or 3rd night, started first cycle R-DA-Epoch 5/14/2018. With sodium bicarb drip for hydration.
    Extreme allergy to Rituxan. Fever over 100F. Teeth started chattering in my mouth.
    Nurse turned off drip. Started at lower rate.

    Had to pee in bottles.
    Cancer ward. Lots of people dying or too weak to take their IV for a walk.
    Was the only one walking my IV around in gown and socks.
    3 hr MRI (lots of whiz bang noises) to check for CNS involvement.

    Ommaya reservoir implanted. (while on chemo/sodium bicarb drip)
    Woke up in neurology ward. Headache. They didn't administer my prednizone doze. New software system.
    Transferred back to on oncology.
    Finished last of the chemo there.
    Lost track of time and chronology of events while in hospital.

    After chemo, first day got neulasta shot at oncologist's office.

    Made it through first round chemo OK.
    Extremely weak for 1 week. Slept a lot. Sat down a lot. Lightheaded when standing up.
    Neulasta kicked in after 7 days. Extreme bone pain day 7 after injection. Both hips and lower back.
    Smoked a joint. Pain went away for 2 hrs. Went to bed... Pain again. Two vicodin later I was able to sleep.

    Recovered, energy levels started to go up.
    3 weeks after last day of chemo, hair starting to fall out.
    I'm trying to stay positive despite bad prognosis (double hit NHL, aggressiveness factor, bone marrow involvement, big tumor size)
    The tumor seems to have shrunk. Not pressing on nerve and causing my right leg to seize up.
    Not taking seizure med anymore. Down to 1 pill a day. Bactrim.
    Going to the park for walks (1 mile and sweating, out of breath)
    Journaling and watching lots of comedies to try to keep up my spirits.

    Going in (inpatient) for second cycle tomorrow, Monday.
    I sort of dread it but I'm in God's hands at this point.
    I'll try everything medical science throws at me to try to get better. Not for myself. I've managed to convince myself it's for my kids. They don't know yet. Daddy has to go on 1 week business trips every 3 weeks. He's also fallen down and come back with a big scar and bump on his head.

    I'm lucky to have support, my parents and my girlfriend.

    Sorry for rambling. Had to write this down. Hopefully it makes sense.
    Writing helps me stay positive and not give into despair and hopelessness.
    No matter how bad my odds are.

    Wish me luck!

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi and welcome to the site though sorry you have had to join us, thats some journey to get the right diagnosis, hopefully now treatment has started you will continue to feel the benefits of it, here is a link to Kat's story she had double hit and went on to have a stem cell transplant and is in remission, so the are positive stories out there.


    Re the neulasta shot, some find an anti-histamine helps along with paracetamol, but check your team are happy for you to use paracetamol.
    50% of people react to rituximab so, so long as its given at a slower rate you should be ok next time. Hopefully things will settle now and you will get into the treatment routine. I had 8 rounds of rchop for dlbc so any questions re treatment, if I can help I will, the are others who have been in a similar position so hopefully they will see your post and share their experience.

    Oh ignore the odds they are out of date by around 5yrs and you are an individual with your version of the disease so no reason why you cannot have a positive outcome.

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear of this. The first thing to know is that lymphoma remains treatable at all stages. Once they have determined the type and sub-type, treatment is fairly well established - not easy, but as you know, necessary. Just for some perspective, I had a poor prohgnosis in 2008. It dropped to extremely poor in early 2009. It dropped from "extremely poor" at least three times since then, and I ended up with three cancers simultaneously (PTCL-NOS, AITL and MDS). So, off to transplant it was. Coming up on three years post-transplant now, ten years total.

    Lymphoma is not the immediate danger it was just a few decades ago. And, diagnosis is still a bear, as you well know. Where are you being treated?
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    hi deant and welcome though I am sorry you have reason to be here, of course. John and POGuy are both correct. Despite the dire projections for people in your situation, the statistics are old and the story has gotten a lot better over the last decade or so.

    I also wanted to ask where you are being treated? Most of us here have, at one time or another, had our diagnosis and treatment plans validated through a second opinion from one of the National Cancer Instituted Designated Cancer Centers around the country. In my case, I was originally told that I was Stage 4 on diagnosis. Upon traveling to Memorial Sloan Kettering in NYC, it was determined that I was, in fact, Stage 1 which completely changed my treatment plan and my decisions as I made this journey over the past ten years. My lymphoma is different than yours and is still considered incurable. Despite that, there have been many advances that give me continued hope for the future.

    Here is a list of the NCI hospitals that are at the leading edge of cancer research and treatment options, I hope you find it of some help. https://www.cancer.gov/research/nci-role/cancer-centers

    Please do keep us posted as things go along as you are able to, we are here to listen, to share, to advise as we are able. Keep in mind that we are, like you, just a traveler along this road. The plus is that many of us have been traveling this path for quite a while and may have some things to share that will help. Good luck with everything.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  5. #5
    Experienced User
    Join Date
    Nov 2017
    Hi Deant sorry for you not easy going into this with two girls to take care .
    For me at least i still dont know if makes it worse ( always thinking about who will take care of them ) or gives us more strength ( i did find thatthe little one at points was enough to give colour and a smile to my wife face ).
    I suspect that they might help us on this endurance .... but their future is always a concern.

    I did watch the video that Johnr posted....there is hope...and whatever you do or think you need to hold on to it.

    I'm still new on this life experience but one thing i have learn is that internet is too scary...mainly because its hard to filter the information so now I moved from google to forums and trying to stick to it.

    Quote Originally Posted by deant View Post
    Holy crap, this looks a million times worse than what GP communicated to me over the phone! Wow!
    That still worries me sometimes, that the doctors hold more information that they reveal ( in my case the breast consultant told us after the biopsy that everything was fine and they were just sending it a second time for confirmation ....that was two weeks were if i knew i would have done different arrangements ).
    But in the end we do have to trust them.

    Quote Originally Posted by deant View Post
    Cancer ward. Lots of people dying or too weak to take their IV for a walk.
    I once though like that....i completely change my mind....Cancer ward is were the fighters go to stand their ground against the beast. Its the modern coliseum. You fight, you get tired but the beast is dead!!!

    Attachment 922

    Quote Originally Posted by deant View Post
    I'm lucky to have support, my parents and my girlfriend.

    Sorry for rambling. Had to write this down. Hopefully it makes sense.
    Writing helps me stay positive and not give into despair and hopelessness.
    No matter how bad my odds are.

    Wish me luck!
    Hang on to that support is priceless, i do miss my closest family and friends on this journey....they are an excellent complement to treatment.
    From a care giver perspective we fell powerless so whatever you can do to help will always be pleasure, so don't be afraid to ask for help for yourself and the girls.

    Wishing good luck and better week.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  6. #6
    Newbie New User
    Join Date
    Jun 2018
    Hang in there! I wish you all the best. That chemo is rough, and it sounds like your body didn't take it well at all. I'm hoping your next scan will show improvement.

    I've been dealing with Da-R-EPOCH also. initially I had 2 large retorperitonial masses in my abdomen, scan after 2 courses of chem showed a LOT of success. I had signs from hip to neck, including lung and heart.

    We'll be sending prayers your way.

  7. #7
    Senior User
    Join Date
    May 2017
    From looking at the date of your original post you should have been through your second cycle of chemo by now, hope you are well. My mother in law was just diagnosed with this variation of lymphoma just a few weeks ago. She saw a Dr Lee at U of MD medical center for a clinical Trial using R-?Epoch but he did not recommend the regimen due to her age, she is 78 and although in good condition for her age just not sure she could ahndle waht you describe you went through! She starts R-CHOP tomorrow and I plan to go sit with her for a bit. Good luck with your continued treatments.
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda
    6/1/17 Admitted back into Hopkins with Gas in Abdomen from perforated bowel
    7/5/17 After a week in the hospital and a months rest delay Chemo for 3 months
    7/21/17 Quarterly CT Scan shows no evidence of Recurrence
    9/29/17 Quarterly CT Scan shows local recurrence of growth on the pancreas body
    10/11/17 Begin Folfirinox regimen for the foreseeable future
    12/27/17 After 4 cycles of Folfirinox Quarterly CT shows no spread of cancer and marginal shrinkage of tumor
    3/19/18 After 5 more cycles of Folfirinox my Quarterly CT Scan showed no spread.
    4/11/18 CA19-9 down from 4800 in December to 384
    6/8/18 PET Scan shows no mets, still local to pancreas. CA19-9 down to 165
    7/5/18 Started Proton Therapy at the University of MD, 36 treatments over 18 days

  8. #8
    Newbie New User
    Join Date
    Jun 2018
    Thank you for the kind positive encouragement johnr!
    I read Kat's account of her double hit treatment and allogeneic stem cell transplant.
    Thank you!

    The first neulasta shot "kicking in" 7 days after was the most painful.
    Last week, I finished the 4th cycle of R-EPOCH-DA.
    Subsequent neulasta shots (after cycles 2 thru 4) didn't present any pain.
    I think it was probably because the first round of chemo had done the most marrow cell kill and so there was a lot a marrow re-generation happening. Hence the extreme bone-splitting pain.

    po18guy and kermica thank you for your kind encouragement. Last week, I finished the 4th cycle of R-EPOCH-DA at HOAG in Southern California.

    About to have the first post-staging PET/CT scan (to compare against baseline/staging PET/CT)

    After the scan next week, I will know if I have 2 cycles (total 6) or 4 cycles (total 8 ) left.

    kermica, I'll share how I've dealt with this huge weight of cancer:

    I've been walking. During chemo (record was 9 miles in one day) and post chemo (2-3 miles a day). Walking keeps my mind off worry, gets me tired so I can sleep, helps with bowel movements, gets blood flowing. Whatever happens, my fight is though walking, keeping as active as I can. Walking is my way of dealing with this monster.

    I still limp on the right side, my suspicion is that I've got some permanent hip bone growth and loss (right ilium) from the cancer. The various muscles (hip, legs) are sore after each walk because the symmetry I had before the cancer warped my right hip is gone.
    After the 3rd cycle, I could no longer "feel" the tumor.

    The type of pain I had, I call it "cancer pain" seems to be gone.
    I'm cautiously hopeful. I've managed to keep my weight up, even thrived during cycles 2-4. The chemo itself in the hospital is not that bad. I do get nausea earlier during chemo with each new cycle. 2nd cycle, I had nausea on day 5, 4th cycle, I got nausea on day 2. The fatigue after every cycle does get worse. The rebound takes longer. I've gotten two blood transfusions after cycle 4 and hydration (one IV bag at the outpatient center for 5 days) after cycles 3 and 4.

    My fingers are numb from peripheral neuropathy as I type this. Overall I'm hopeful I will make it through this. I'm in much better shape now
    than I was back in June when I wrote the original post.

    Thank you Jotey! I fight for my girls. You are right, the cancer ward is a modern day coliseum. I didn't think of it in those terms.
    My caregivers are true heroes. I worry about my 64 year old father
    through this, he's stepped up the most, drives long distances,
    does shopping for me, he's just amazing. It should not be this way
    at age 39 for me, I feel I should be taking care of my parents, not
    the other way around. I feel guilty about "coming down" with
    cancer and I'm continually asking myself what I could have done
    differently in my life for me to have avoided cancer. Eating more
    salads, no read meat, becoming vegetarian. I don't know. I feel
    like a burden on my caregivers. Before this, I used to be the
    provider, independent, did all the shopping and hauling of groceries,
    took care of everyone.

    eaglemike, thank you for your kind words. First cycle was a shock to the system. Was able to handle subsequent cycles much better. Thank you for your prayers.

    edtude, sorry to hear about your mother in law. I will pray for her. R-EPOCH-DA is rough. R-CHOP is more tolerable, fewer side effects. Initially it was used across all DLBCL, before double / triple hit FISH testing was done. It's a tolerable chemo for older patients.

    edtude, for me, cycles 2 through 4 were much better than the first cycle.
    My oncologist administered intrathecal chemotherapy with
    methotrexate through the ommaya reservoir on cycles 3 and 4.
    It made me a bit slow / dizzy, but I was up and out and about the next
    day after sleeping it off. All in all, I feel I'm in a better place. I make
    no time to worry, stay busy and walk as much as the weather and my body permits.
    Last edited by deant; 08-04-2018 at 02:50 AM.

  9. #9
    Moderator Top User
    Join Date
    Mar 2010
    Hi Deant, good to read your update and it will help others who may find themselves in a similar position, the walking will help as you say in lots of ways. Have they tried apprepitant for the nausea it worked for me and blocks the receptor that triggers you being sick. The other thing worth discussing is dropping the vincristine so that the peripheral neuropathy does not get any worse, though it is manageable if the damage is permanent.
    Fingers crossed for a good scan let us know how it goes.

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  10. #10
    Experienced User
    Join Date
    Sep 2017
    Quote Originally Posted by deant View Post
    The first neulasta shot "kicking in" 7 days after was the most painful.
    Deant, I can relate to this. I did R-CHOP-6 August through the end of November of last year and my neutrophils dropped to zero. I recall the Neulasta would "kick in" exactly day seven--almost to the hour--and was very painful. Like every bone in my body was in a vice. Especially my ribs, hips, and shoulders/upper arms. Strangely enough, my femurs weren't too bad.

    Re your FISH news, I am not double hit like you--but I do have extra copies of MYC. Some studies, including one from MD Anderson, indicate that this is refractory and carries a poor outcome akin to double-hit. My oncologist/hematologist consulted with University of Washington Pathology for clarification--and they vehemently (their words) disagreed with the Anderson study for reasons I am still unclear about. In any event, I recently passed my 6-month scan and remain NED. And my cancer was certainly not refractory. And my point, as all the mods here say often, is that every case is unique. Sounds like your head is right to get through this scary business. Good job.

    Re walking. Wow, I smiled when I read your words as this is exactly how I got through it too. I'll admit, the last round of R-CHOP was tough and I went a full seven days without my evening stroll toward the end. In any event, back to my old routines now--mountain biking and hiking. But I really love walking with my dog now. And thanking God and enjoying every moment even more than I used to. I'm climbing Mount Rainier here in WA this Thursday/Friday--just to say I did it post-chemo.
    Last edited by Ifelloffaladder; 08-09-2018 at 03:31 AM.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.


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